Hi Sallyk, welcome to the forum! It's wonderful the treatments work so well for you.
Live in Australia my story(40 posts) (8 voices)
Thanks for making this forum possible, a great help to many of us I'm sure
I'm so glad to finally read some positive feedback, I was getting on here to ask for some positive stories. I'm on a couple of other forums through Facebook and it is all doom & gloom. I'm so glad IVIG is actually working for you. You mentioned that you are getting 30 Grams is that monthly? I have been trying to get my Neurologist to increase my doses as the first loading dose worked fantastically but now not. I suppose one bonus is now he has put me onto 3 week treatments instead of monthly, but doesn't seem to have made a difference. Which is why I think I need increased dosage, I'm currently on 50 grams now every 3 weeks.
There are lots and lots of reports of people doing very well on IVIg.
The range of doses that works for different people varies widely. How much do you weigh?
Never mind, I see from another post that you weigh 50 kg. So you are getting 1 g/kg every three weeks. Hopefully you can talk them into doubling that to see if it makes a difference. I was getting 2 g/kg. There was one study where they kept boosting everybody's dose until they saw an effect. The highest one was getting 4 g/kg. It's hard to manage that in today's financial climate.
Hi Sallyk, I'm also in Australia, Victoria. Can you please just explain the doses you were getting I'm a little unsure if you were getting 30 gems daily or over the first five days. My reason for asking is I have been trying to get my Neurologist to up mine but his comment to me was "not interested in symptoms, just want to make sure it doesn't get worse! This is after I explained to him the loading dose was fantastic but getting worse since. My loading dose was 105 grams given over 3 days worked brilliantly everything stopped (twitching, stiffness, pins & needles in my feet). Next dose a month later at 50gms given over 2 days - only lasted 3 weeks, next dose month later 50 grams only lasted 2 weeks etc. not does not seem to be doing anything so finally the neurologist has agreed to do 50gms every 3 weeks but will not increase the dose. Glad it is all going well for you
Hi again, it's actually 30g every fortnight for two days in a row. That's 30g of 10% each day. Working well for me, symptoms now stable and strength improving slightly. My left hand though which had the most muscle wastage still isn't perfect but much improved. I can grip things now!
It appeared to me that.different brands make a huge difference, you need to find the one that works best for you. I have tried 3 brands. I've been so lucky to be in WA and go to Fiona Stanley Hospital. Their neurology dept is excellent and caring.
Still trying to get them to increase dosage, have only managed to get the same dose but instead of monthly now every 3 weeks. Feel like I'm beating my head against a brick wall here. I'm trying to get into see another Neurologist that I've been told is very good so hopefully something changes
Hi Heather, sorry I haven't been on here for ages. I'm in Melbourne and have MMN and have been on IVIG for ~ 5 years. Overall, I'm doing really well - stable, not getting any worse. I work full time and have 3 kids so life is pretty busy and dealing with MMN and IVIG can be challenging.
I've read your posts and I notice your concerns re twitchiness. My understanding is the key measure of IVIG effectiveness (other than blood test) is strength. I saw a neuro physio and asked him to "baseline" me, then measured it each year. I made sure this info got to my neuro so they had an additional data source to assess the IVIG effect. I have found that exercise to build strength (I see physio, exercise physiologist & go the gym) has really helped keep my body together. I have been on 3 weekly (currently on Kiovig I think) but went to 4 weekly so I could get more of my life back. I'm a tad worse but am ok with the trade off. Exercise also really helps with canulation - keeps the veins pumping ...
Once diagnosed and with measurable benefit, no one has questioned the cost of my treatment and my neuro has provided excellent support. We have increased my dose up a bit, I think I am 47.5g and I'm (ahem) 80kg. I don't think the weight relationship is too strict, it's just a guide. My neuro has also said there's no max dose and contrary to what I'd read, she doesn't think its effectiveness wears off over time; conversely she thinks that as people age their condition slows so sometimes treatment can slow, and if you're lucky, you get to remission.
However, ALL my neuro's advice has been cautious about taking the IVIG down or away, as they fear that once you lose function, it's really hard to get it back up. I'm not a Dr, but guess that means they fear permanent nerve damage when less IVIG to counteract what is going on at the cellular level.
I'm very happy for you to contact me personally and will leave it to Twitchy to advise how that works. I don't really want to use the FB site for privacy reasons.
You could also look at the INgroup (they have some info on MMN) but they are 99% focused on CIDP & Guillain-Barre and I haven't found them to have much of a member base with MMN. I think I have posted any relevant info they produced onto this site.
(and I hardly limp any more!)
PS Heather, I also saw a hand therapist, had a brace made. Ultimately well-meaning but not very helpful. I find very targeted exercise on the affected areas works best for me - I try to analyse which muscles & functions are affected then try and re-create that movement thru an exercise (for me this is forearm, feet, calves, thigh). I am aiming to counteract the atrophy and keep the body working as a unit - eg I have built my calves & left quad up so I am no longer falling over. And I'm getting better movement in my feet so they are less like blocks of wood. Balance is still tricky and walking is hard work. I do get pins & needles & find zinc, Vit B & magnesium help. Exercise reduces the twitchiness. I have lost sensation in feet so apparently that means there is some sensory nerve involvement as well, which can occur with MMN.
Hope that helps.
I'm not a Dr, but guess that means they fear permanent nerve damage when less IVIG to counteract what is going on at the cellular level.
It's generally acknowledged that permanent axon damage can occur, which is regarded as pretty much irreversible. That's why a lot of people consider it important to not let yourself backslide.
I'm happy to hook people up behind the scenes. Send me an email: twitchy firefly at MMN forum dot com, without the spaces.
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